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Day care for people with dementia:

A qualitative study comparing experiences from Norway and Scotland

Authors: Anne Marie M Rokstad, Louise McCabe, Jane M Robertson, Margit G Strandenæs,

Signe Tretteteig, Solfrid Vatne

Accepted for publication in Dementia published by SAGE. The published version is available

at: https://doi.org/10.1177/1471301217712796

Abstract

Potential benefits from day care attendance are reported in the literature for both people with

dementia and caregivers, although the evidence-base is limited. The study aimed to explore

and compare experiences of day care services for people with dementia as described by day

care attendees and their caregivers in Norway and Scotland. Whereas day care receives

prominence in Norway’s national plan, Scotland does not highlight day care in its national

dementia strategy. A qualitative cross-national comparative study was undertaken. Semi-

structured interviews were conducted with 17 people with dementia and 17 caregivers in

Norway, and 19 people with dementia and 15 caregivers in Scotland. Data were analyzed

thematically and comparatively to explore the experiences and outcomes of the participants.

Findings indicate positive outcomes from day care for both people with dementia and

caregivers. Satisfaction with services related to meaningful activities, getting out of the home,

strengthening social connections and careful staff facilitation to create a positive and

welcoming atmosphere. There were strong similarities in the content of services and

experiences reported in the two countries. Some minor differences were noted, with caregiver

support being an area of notable divergence in experiences.

Specialist day care for people with dementia seems to provide important support and positive

outcomes for people with dementia, and respite and reassurance for their caregivers. More

research is needed to further explore the effect of day care designed for people with dementia

both on the attendees and their caregivers.

Keywords: dementia, day care, family caregivers, qualitative research, quality of life

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Introduction

Day care for older people is a long-established service and in recent years day care designed

for people with dementia has received increased attention as a positive intervention to

increase wellbeing for home-dwelling people with dementia and provide respite for

caregivers. At present, there is only limited evidence concerning the effects of day care

centers designed for people with dementia. A review of the international literature made by

the Norwegian Knowledge Centre for the Health Service (NOKC) (Reinar, Kirkehei, Dahm,

& Landmark, 2011) concluded that day care designed for people with dementia might

contribute to reductions in the incidence of behavioral problems (Ishizaki et al., 2002),

improve perceived quality of life for people with dementia (Strandenaes, Lund, & Rokstad,

2017) and decrease the burden of care (Ishizaki et al., 2002; Mossello et al., 2008; Zarit, Kim,

Femia, Almeida, & Klein, 2014; Zarit, Stephens, Townsend, & Greene, 1998). As a respite

and support service for caregivers, day care has the potential to provide a feeling of safety

and relief, reduce the feeling of burden and provide support in their role as caregivers

(Gustafsdottir, 2014; Tretteteig, Vatne, & Rokstad, 2016). However, caregivers may feel

reticent about day care (Tretteteig et al., 2016; Zank & Schacke, 2002) while people with

dementia may be reluctant to attend (Durand, James, Ravishankar, Bamrah, & Purandare,

2009; Huang, Griva, Bryant, & Yap, 2017; Nogales-González, Losada-Baltar, Márquez-

González, & Zarit, 2014). A literature search made by NOKC in 2014 could not identify any

relevant new studies on the effects related to day care for people with dementia (Dahm,

Hafstad & Dalsbø, 2014). Hence, there is a need for more research to describe the

experiences and outcomes of day care designed for people with attending the service and

their closest caregivers.

Day care policy in Norway and Scotland

In Norway, dementia care services are mainly run by local authorities. Due to national

legislation, the local authorities must offer in-home nursing care and residential care. In the

national Dementia Plan 2015 (Norwegian Ministry of Health and Care Services, 2008), active

care was one of the main approaches. As part of this strategy, offering day care services

designed for people with dementia was a main priority. The Government wanted to

emphasize day programs as essential and fundamental elements of integrated care services for

people with dementia. Day programs were described as the missing link in the care chain. To

increase the capacity and quality of day programs, local authorities are offered funding to

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provide day care services for this group of people close to their own home. Despite increased

availability, the utilization of day care as a recommended service is still low. Hence, the

policy of funding to increase day care availability is continued in the second Dementia Plan

2020 (Norwegian Ministry of Health and Care Services, 2016). Day care users do not pay for

the service if it is considered a health care service for the person with dementia. However, if

it is defined as a respite service for the family caregiver there is a subsidized payment for

attendance. The staff is payed health and social care workers but some day care centres add

volunteers to the payed staff. Day care service is offered and regulated by the municipalities.

The objectives of day care are to offer meaningful activities and social support and a safe

environment to enhance coping and to improve quality of life for the attendees. Additionally,

day care should act as a respite service for caregivers and possibly postpone the need for

nursing home placement (Norwegian Ministry of Health and Care Services, 2008).

The situation for day care in Scotland is rather different to that found in Norway. While

dementia has occupied a prominent position in policy rhetoric and action over the past ten

years with a slew of policy documents including national strategies, standards for dementia

care and a charter of rights for people with dementia (Robertson et al., 2016), day care as a

service option has seen a parallel lack of attention. Day care is not mentioned in either of the

two Scottish dementia strategies (Scottish Government 2010; 2013a) nor in the consultation

for the upcoming strategy to be published in 2017. The focus of these strategies has been on

early diagnosis, post-diagnostic support and acute hospital care. Recent legislation for social

care in Scotland (The Social Care (Self-direct support) (Scotland) Act 2013) promotes

personalization and self-directed support, the provision of personal budgets or direct

payments that enable people to decide on their own support. This might involve employment

of a personal assistant or payment for a respite break. In England, where a similar policy

approach is seen, it has been argued personalization has led to the closure of day centers

(Needham, 2013). Day care is means tested and some will get it paid for while others will pay

themselves. There may also be some direct costs to attendees for lunch or transport. Day care

is provided by statutory, private and third sectors organisations. Alzheimer Scotland is the

biggest provider of dementia day care for people with dementia and there is a mix of paid

professional staff and volunteers. All social care services are regulated by the Care

Inspectorate.

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Aim

The study aimed to explore and compare the experiences and outcomes of day care services

designed for people with dementia as described by day care attendees and their caregivers in

Norway and Scotland. The research question asked was: What are the experiences and

outcomes from day care attendance for people with dementia and their caregivers in Norway

and Scotland?

Design and methods

The study had a qualitative descriptive design (Graneheim & Lundman, 2004) where

qualitative interviews with people with dementia attending day care and their caregivers were

conducted in Norway and Scotland.

The study was initiated by the collaboration between Norway and Scotland in the planning of

the ECOD study (Rokstad et al., 2014). The research group consists of six researchers who

collaborated through a number of on-line and face to face meetings. The work involved

concretizing of the study design, inclusion criteria and interview guides, followed by joint

data analysis.

Sample and recruitment

The inclusion criteria for participants were: persons with dementia attending day care

designed for people with dementia, and caregivers of attendees. When possible, dyads of

people with dementia and their caregivers were both included. People with dementia had to

have the capacity for communicating in an interview and giving written informed consent.

The participants in Norway were recruited from the ECOD study (Rokstad et al., 2014).

Seventeen people with dementia and caregivers were recruited from six centers. In Scotland,

the project was conducted in collaboration with a third sector organization that funded the

project and acted as gate keepers. A total of 19 people with dementia and 15 caregivers from

six centers participated.

The characteristics of the participants are described in Table 1. A purposive sample of

participants represented both genders, a variety of ages and different relationships to the

person with dementia (spouses, children/children in law, living together with the person or

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not). All but one of the caregivers had face-to face- contact with the person with dementia a

minimum of once per week. Both urban and rural areas were represented.

Table 1. Sample characteristics

Norway Scotland

Day care attendees:

Gender: male/female

17

7/10

19

9/10

Caregivers:

Gender: male/female

17

5/12

15

12/3

Relationship:

Spouses¹

Daughters/daughters in law

Son

Niece

8

6

3

7

6

1

1

¹ all spouses lived together with the day care attendee

The interviews

Based on the study aim, a semi-structured interview guide that enabled cross-country

comparison was developed.

The key themes covered in the interviews were:

• Experiences of attending day care

• Impact of day care on the lives of people with dementia and their caregivers and

outcomes experienced

• Impact of day care on relationships between people with dementia and their

family as well as with staff at day care

• Experiences of caregivers with day care services and their relationships with staff.

Interviews of people with dementia in Norway were carried out at day care centers (n=17) in

March and April 2015. People with dementia in Scotland were interviewed either at the day

care center (n=17) or in their own home (n=2) in the period from November 2014 to April

2015. Not all participants had the ability to elaborate on all questions in the interview guide.

Interview length varied from 10 to 35 minutes.

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Interviews of caregivers in Norway were conducted face-to-face at day care centers (n=4), by

Skype (n=2) or at home (n=11). In Scotland, interviews were conducted at the day care center

(n=7), by telephone (n=2) or at home (n=6). Interviews lasted from 30 to 90 minutes.

The data analysis

Thematic analysis (Graneheim & Lundman, 2004) of the data followed three steps: 1) Total

impression – from chaos to themes. 2) Identifying and sorting meaning units – from themes to

codes, the codes being a text fragment containing information about the research question. 3)

Condensation – from code to meaning, where data were reduced to a decontextualized

selection of meaning units and sorted as thematic code groups (Malterud, 2012). Initially,

analyses took place separately in the two countries, before comparing and combining

thematic frameworks and identifying mutual themes.

Ethical considerations

People with dementia are considered a vulnerable group; however it is possible to include

people in interviews if the settings and questions are tailored to their individual physical and

cognitive abilities. In this study, interviewers were experienced in communicating with

people with dementia, through active listening that was sensitive to the person and their

views. All participants were able to give informed written consent to take part in the study.

Established ongoing consent processes were followed (Dewing, 2007).

Findings

The findings developed from qualitative fieldwork conducted in Norway and Scotland. Four

main themes with subthemes (illustrated in Table 2) emerged relating to the experiences of

people with dementia attending day care services and their main caregivers, and the outcomes

they reported. Commonalities and some important differences were found across the data

from the two countries and these are presented within these four themes.

Table 2. Themes emerged from the comparative analysis

Main themes Subthemes

The experience of day care From reluctance to acceptance and enjoyment

Day care structures the days

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Conversations, mealtimes and meaningful

activities

The importance of relationships The affirmation of the person with dementia

made by the staff

Being in it together

Being apart improves being together

Caregiver support from staff

Outcomes for people with dementia Increased wellbeing

Positive impact on function

Outcomes and experiences of

caregivers

Reassurance and respite

Challenges for caregivers

Quotations are used to illustrate the findings. These are identified by using acronyms

including information about country, attendee or caregiver, and gender (N= Norway, S=

Scotland, A= attendee, C= caregiver, F= female, M=male).

The experiences of people with dementia

The experiences of attending day care were described by attendees and supplemented by the

viewpoint of their caregivers.

From reluctance to acceptance and enjoyment

Most of the people with dementia in Norway and Scotland spoke about an initial reluctance

to attend, with some caregivers describing their relative actively resisting.

I think I nearly stopped because one night she said to me, there is somewhere and I

don't remember where it is, but there is somewhere I go and I don't like it and I don't

want to go, and I thought I can't do this anymore.

SCF

However, reluctance quickly turned to acceptance and enjoyment as people were positively

met by staff and other participants. Caregivers were usually the ones who initially had to

persuade the person with dementia to go.

I had a lot of skepticism to start with but I soon realized that this was something very

good. My son gave me very strong advice to go there in the beginning when I strived

against it.

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NAF

To take the role as the persuader was not easy for many. Negative feelings of guilt and doubt

were described. Some caregivers expressed the need to “trick”, while some used low-tech

devices such as a white board to orient the person about their upcoming attendance at day

care and incorporate this into their daily routine. Growing acceptance of day care among

people with dementia developed through their everyday experiences at the centers.

Day care structures the days

An important aspect of day care, as described by both attendees and caregivers, is that it

structures the day with routine and repeated activities. Most centers in Norway and Scotland

had a schedule similar to the one described by the following person.

A typical day is that I get picked up by the bus and brought here. Then we have

breakfast, then she, one of the ladies here, reads the newspaper so we get to know

what’s happening in our town, than we have a quiz and some physical exercise

.…. Then we have dinner and after that we drive home again.

NAF

The social aspects of day care were central to the routines and activities within this structure

and centered on conversations, mealtimes and activities.

Conversations, mealtime and meaningful activities

The content of day care in Norway and Scotland was similar, with conversation and laughter

often mentioned as motivation to attend the service. Experiences of inclusion and social

support were highlighted as particularly important by those attending.

We talk a lot together, and we make jokes….

NAF

However, some participants appreciated the flexibility to withdraw from social activity

during the day, just sitting at a distance and follow the conversation without taking part.

When people were asked to describe the content of day care, almost everybody mentioned

meals as an important part of the service. Caregivers were reassured that their relatives were

eating a good diet. Participants described tasty and nice-looking food and the positive

atmosphere and social interaction during meals.

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We eat breakfast and talk … it can take up to two hours …. we talk so much …. it is

very pleasant!

NAF

Meaningful activities were also important. Activities included singing, physical games and

exercising, arts and crafts, word games and quizzes. Activities were set at a level thought to

be appropriate for the day care attendees with an emphasis on fun and humor.

Well we play dominoes or other card games and things like that and we’re very good

at cheating each other, you know. So people realize it’s only a game, it’s not looking

for somebody with an Einstein brain, because there aren’t many of them, so.

SAF

These activities provided enjoyment and meant day care was a pleasant experience for most

who were interviewed. Caregivers underlined the importance of meaningful and

individualized activities that supported people to feel useful, such as cooking. A few people

felt that some of the activities provided were not meaningful for them and could be childish.

…I feel it’s strange filling in your time throwing a ball across the room trying to hit a

skittle, you know, and there isn’t an awful lot of end product.

SAF

The Norwegian participants mentioned the frequent opportunity to go out for a walk with

staff and other attendees. This was an opportunity to continue their existing lifestyle.

We walk down here in a group, all the way to the church and back …. That’s alright, I

have been doing that all my life ……. so I enjoy it!

NAM

Scottish participants reported positively on outings, such as Christmas dinner at a local hotel,

but these seemed to be infrequent and some people wanted to go out more often.

Increased social interaction was a particularly important outcome of activities, and therefore

relationships between staff, attendees and caregivers shaped experiences of day care for all.

The importance of relationships

This section looks in turn at the relationships between and within these three groups

The affirmation of the person with dementia by staff

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Positive relationships with staff were mentioned frequently in both countries. The importance

of staff being friendly with a positive approach was underlined, particularly around

understanding the experience of living with dementia. Staff were described as patient,

engaged, pleasant and smiling.

It is very important that the staff are nice and friendly. Otherwise it would not have

been so easy for us. It all depends on them.

NAF

Facilitation of activities by staff involved a balance between directing activities and keeping a

relaxed atmosphere. People with dementia highlighted the approachability of staff, the sense

of fun they created and how they worked hard to look after those attending day care.

They speak to you, you can talk to them…. Everything is done for you, you know. It’s

great to think now you can be looked after like this, you know.

SAM

The quality of day care seemed to be highly dependent on the way staff organized the service

and engaged with people. It was clear the involvement of staff was valued.

Being in it together

The relationships between people attending day care varied. Many participants in Norway

described having somebody they felt close to and with whom they spent most of their time.

However, people were accepting of preferences around the level of closeness.

You realize quite quickly when people are interested in contact or not …. if not, you

let them in peace. Nobody force themselves on anybody…. I am satisfied with that.

NAM

In Scotland, although there were some examples of particular friendships, people did not

usually form close relationships but enjoyed spending time with a familiar group.

Do you have any particular friends amongst the group or…?

Och, no, we’re all…we’re all in together.

SAF

Participants seemed to have a feeling of being in the same situation and this created a sense of

togetherness, which those attending appreciated and appeared to benefit from.

Being apart improves being together

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Attending day care also appeared to benefit the relationship between the person with

dementia and their family caregiver. Having a break from each other was considered

supportive, for example giving couples something to talk about from outside the home.

It gives him a break from me and it gives me a break from him. Then when he comes

home I’m saying, have you had a good day? It gives you something else to talk about

to each other.

SCF

Some people with dementia also described respite for their relatives having a positive impact.

To be at home and just stepping on each other’s toes all day long ….. that’s not good.

So I don’t mind coming here.

NAM

Sustaining relationships between people with dementia and their caregivers in this way

appeared to improve wellbeing for both.

Family caregiver support from staff

Some caregivers in Scotland talked about the advantage of having support from staff

although this was not a formalized service. Having someone to talk to was particularly

helpful for those who no longer had access to caregiver support groups due to reported cuts in

funding for such services. Knowledge of dementia was an important aspect of this support.

What I find is... it was just the fact that you were talking with someone that

understood what you were saying….. just somebody to talk to.

SCF

In Scotland, staff would take the initiative in contacting caregivers, and caregivers felt that

they could call on the service themselves if they needed support. The role of the manager

could be particularly important as a first point of contact. In Norway, communication

between staff and caregivers varied from that described in Scotland. Some expressed the need

for more direct communication, feedback and information on what happens in day care.

There is no kind of communication between them and me. I would have liked that,

now and then, to get some feed-back

NCF

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The need for more information about daily activities at the centers was requested by some

caregivers, given memory problems could make it difficult for the person with dementia to

tell their caregivers about what had happened during day care.

Outcomes for people with dementia

A range of positive outcomes related directly to people’s experiences at the centers but often

had a wider impact. These outcomes included: increased wellbeing while at day care and

afterwards, increased social engagement at day care and with others, small improvements in

function and mood, improved relationships with caregivers, and overall satisfaction with the

service. Social and relational aspects have been discussed above, and this section focuses on

increased wellbeing for people with dementia and outcomes relating to function.

Increased wellbeing

Due to an emphasis on more concrete aspects of day care in interviews, discussion around

therapeutic aspects was limited amongst people with dementia. When caregivers were asked

about therapeutic elements of day care, they tended to focus on the general benefits of their

relative getting out and having company, and increased wellbeing in a more general sense.

My mother blossoms when she is there (….) Otherwise, she is not keen to dress up or

change clothes.

NCF

Keeping engaged was an important theme discussed by people with dementia and caregivers

in relation to wellbeing. This active engagement incorporated mental and social involvement.

That engages her mind, it certainly does, because she comes back and she tells me,

oh, I’ve helped here

SCF

Such engagement often led to noted improvement in mood.

Though she might not remember what she’s done, she still has a nice…a good

mood, a lifted feeling about her that she’s been out and that she’s been somewhere.

SCF

Physical activity was also an important aspect of wellbeing, although caregivers and people

with dementia did not elaborate on its therapeutic benefits.

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Positive impact on function

People took part in a wide range of activities, as presented above. Activities were intended to

be enjoyable and also to provide stimulation. Both people with dementia and caregivers

reported that activities were helpful for providing mental stimulation.

You learn things, they do things, quizzes and stuff and I always liked learning things

and doing quizzes and stuff like that.

SAF

Some caregivers reported improvements in levels of cognitive impairment and this was also

expressed by some people with dementia.

I would not be like this [cognitive abilities] if I didn’t attend day care…I

am almost certain of that

NAM

Other caregivers noted an improvement in awareness and communication, linking this to the

benefit of social stimulation.

While these are individual examples that may not be generalizable, they do point to the

therapeutic impact of attendance at day care for some people with dementia.

Outcomes and experiences for caregivers

Caregivers described outcomes of day care and how the service influenced their situation.

Reassurance and respite

Reassurance was a key outcome for many caregivers in both countries. This reassurance

related to confidence in the staff firstly to notice any changes in the person and secondly to

communicate these changes to caregivers.

I think when you’ve got a member of staff phoning you up saying well she’s just

slightly more confused today, you know, something I can act upon.

SCF

This reassurance provided ‘peace of mind’ from the knowledge that their relative was being

well cared for.

It feels so good to know that my mother-in- law is in a place where she enjoys herself.

NCF

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As discussed above, caregivers were able to benefit from a break or ‘respite’ while their

relative attended day care. Knowing their relative was being well looked after enabled

caregivers to feel comfortable taking a break from their caring role. This was a key outcome

for nearly all caregivers in the study. Having time for themselves allowed caregivers to catch

up with housework and shopping, in addition to having time to enjoy hobbies and pastimes.

Spending time with friends and family was another important aspect of having a break.

When I wake up in the morning, I know that this day is mine …

NCF

Where people were routinely taken to the day care center by their relatives in Scotland,

caregivers felt they benefited from being able to stay and talk with staff.

Yes, it's supposed to be my break and I should just drop her and go, but I stay for a

while and sit with her and then I tend to just stay with them for a while and just get a

chat, because it's just so nice and relaxed.

SCF

This kind of ongoing support for caregivers was not as common in Norway due to differences

in service structure as discussed above.

Challenges for caregivers

While caregivers reported positively on day care they did reflect on the challenge of getting

the person ready in time for pick-up. A number of caregivers described this as ‘a struggle’.

Challenges could involve getting the person washed and dressed in time, or difficulties

getting the person to the toilet at the right time to avoid problems with continence.

Then she needs the toilet, that's what happened today, I thought we were late. That's

the only thing, it's not negative about the center, it's just for me I get quite stressed

trying to get her ready.

SCF

However, for some, this challenge could be managed by scheduling home care services to fit

in with the service pick-up time. Most people described transport arrangements as

satisfactory, whether using cars or a minibus. However, there were some who found the

minibus service challenging, either if the person was at the beginning of a long pick-up

schedule, or if the imprecise timing of the pick-up caused the person to become agitated.

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Mum will sort of wait at the window and there’s a rough idea of the time because

obviously it depends who’s picked up before and after and things, so Mum will sort of

wait, which she finds tricky, the waiting.

SCF

Some caregivers felt that flexibility in the timing of sessions and additional days at day care

would be a bonus, although due to waiting lists and demand this was not always possible.

Yes, it gives me relief. Absolutely! However, when the day care is closed for some

days, or you want to go for a vacation or something like that, it is really difficult.

NCF

Others were satisfied with their current number of days of attendance. Overall, caregivers’

experiences and outcomes from day care were very positive.

Discussion and Implications

Different policies but similar outcomes in the two countries

Both in Norway and in Scotland, a high level of satisfaction with day care designed for

people with dementia is described by day care attendees and caregivers. Policies regarding

day care as a service for people diagnosed with dementia is different in the two countries.

While in Norway day care is prioritized in both dementia plans (Norwegian Ministry of

Health and Care Services, 2008, 2016), such a service is not mentioned in either of the

Scottish dementia strategies (Scottish Government 2010; 2013a). These differences in

national policy might influence the number of centers available but do not seem to have any

major impact on the value and quality of the service as described by people with dementia

and their caregivers. There are similarities in the way day care is organized and in the content

of activities that are offered in the two countries. There are also similar views about the

importance of staff skills and competence. Additionally, the availability of meaningful

activities is important. The attendees described the need for getting out of the house and

spending time apart from their relatives. This seemed to influence the relationship positively

as described both by day care attendees and caregivers.

The outcomes of day care for people with dementia

According to the Norwegian Dementia Plan 2015 (Norwegian Ministry of Health and Care

Services, 2008), the objectives of day care services are to offer meaningful activities, social

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support and a safe environment to enhance coping and improve quality of life for people with

dementia. Research suggests broadly similar aims across different countries (Moriarty and

Manthorpe, 2012; Mossello et al., 2008; Zarit et al., 2014). The findings in our study confirm

the potential of day care services in both countries to meet these objectives. There might be a

challenge to offer tailored and meaningful activities to all attendees as there are a variety of

individual needs according to functional level, cognitive impairment and personal preferences

in the groups. Some people with dementia expressed a positive impact from day care

attendance on their level of cognitive functioning. The potential to maintain or improve the

level of cognitive functioning might be extended if staff were able to offer cognitive

stimulation programs as part of the service. There are some promising results from such

cognitive stimulation programs for people with dementia in mild to moderate stages of the

condition (Woods, Aguirre, Spector, & Orrell, 2012).

The major contributors to satisfaction with day care as described by attendees and caregivers

were: competent staff with a positive attitude, knowledge of dementia, sensitivity, and the

ability to facilitate and provide the level of support needed for interaction in the group. The

possibility for social connections at the day care was underlined to be important. However,

for some participants, the possibility to withdraw from socialization in the group was stated

as a necessity. ‘Getting out’ to another environment beyond their home was an important

outcome for all who participated in the study, which benefited the individual as well as

supporting family relationships. In Norway, ‘getting out’ extended beyond the day care center

to incorporate outside activities, an aspect of day care that was less prominent in Scotland.

Day care as a respite service for caregivers

According to the findings, there was a high level of satisfaction among caregivers concerning

the experiences of day care as a respite service. They had time apart from their relative and

time to do the things they needed to do for themselves. However, there were some practical

and emotional challenges linked to day care that they faced.

The practical challenges associated with getting people ready to be picked up in the morning

are significant. Previous research has shown that people whose behavior is perceived to be

challenging, and who need assistance with dressing and continence, are those most likely to

discontinue with day care (Mavall & Malmberg, 2007). Similarly, these aspects were

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reported to cause difficulty for caregivers in this study. Assistance from home care services

may be necessary to assist caregivers if this is considered to be an ongoing challenge.

It could also be difficult to motivate the person with dementia to attend day care at the

beginning. Some caregivers had to deal with feelings of guilt because they left the person

with dementia at the center. If a person with dementia refuses to go or expresses

dissatisfaction with day care placement, it often creates feelings of guilt and stress (Zank &

Schacke, 2002). However, the data that emerged from this study indicated that the initial

resistance to attend day care is temporary for most attendees. This knowledge could be used

to reassure caregivers that, even though the person with dementia may be reluctant to attend

the service in the beginning, there is a high possibility that they will come to enjoy the service

fairly quickly.

The positive potential for day care to alleviate feelings of burden and stress among caregivers

has been well-documented (Zarit et al., 2014). Yet, the need for caregivers to be convinced

that their relative will be well cared for at day care should not be underestimated. Previous

research shows that caregivers need to be reassured that day care is a high quality service:

they need to know the person with dementia will be well treated and that staff have high

competence in dementia care (Tretteteig et al., 2016). Additionally, the existence of a tailored

program based on specific knowledge of the person’s needs and a feeling of shared

responsibility with staff are described as examples of good quality (de Jong & Boersma,

2009; Phillipson & Jones, 2012). If we wish caregivers to support the use of day care,

evidence about the quality of care therefore needs to be available and accessible.

Moreover, the wellbeing of caregivers is found to be a predictor of entry to residential care

(Cohen-Mansfield & Wirtz, 2009; Liu, Kim, & Zarit, 2015). Services that have a positive

impact on caregivers’ wellbeing and their relationship with the person with dementia may

therefore have the potential to delay the entry to residential care. This is potentially an

important contribution of day care. Given the positive outcomes of day care to provide respite

and reassurance as reported by caregivers in this study, this would suggest that day care

services should be prominent in national policy frameworks as a means for families to

manage the challenges associated with supporting a person with dementia to live at home.

Limitations and gaps in day care

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While the findings are mainly positive, there were some identified limitations and gaps in

services. The utilization of day care in Norway is described as low (Norwegian Ministry of

Health and Care Services, 2016) and there could be several explanations for this. People

attending day care in this study describe their initial reluctance about using the service. The

challenges connected to initial attendance were also articulated by caregivers. The potential

benefits of day care both for people with dementia and their caregivers could be highlighted

more fully by local authorities. The possibility for a gradual transition might be offered, as

the initial reluctance seemed to turn to acceptance and enjoyment after a short period of time.

A lack of flexibility in the service was a limitation in both countries. The findings suggest a

need for more flexible opening hours and some participants asked for additional days at day

care. The inappropriateness of some activities was also mentioned: there is a need to tailor

activities to meet individual needs and cultural acceptance. A person-centered approach

(Kitwood, 1997) as a value base for day care is therefore necessary.

The need for caregiver support from the staff was mentioned from participants in both

countries. Caregivers in Scotland experienced a higher level of face-to-face communication

and support from staff than participants in Norway. Caregiver support in most municipalities

in Norway is organized in ‘Schools for caregivers’ offering four to six meetings with

information about dementia and participation in support groups. The existence of this

program may explain the lack of support offered to caregivers by staff in Norwegian day

centers. Previous research indicates that support provided by day care staff to improve

caregivers’ knowledge and skills in dementia care might delay the need for institutional

placement (Balla et al., 2007; Cho, Zarit, & Chiriboga, 2009). Evidence also suggests that

day care which provides respite for caregivers may be cost-effective in the long-term (Knapp,

Iemmi, & Romeo, 2013). Therefore, greater support for caregivers within day care service

structures might have long-term beneficial outcomes in addition to having immediate value

for caregivers. However, as the dementia disease develops and the symptoms of cognitive

and practical impairment increases there will be need for a higher level of care than can be

offered by day care services.

Methodological considerations

The use of in-depth interviews with people with dementia and caregivers was considered a

suitable method to understand experiences and outcomes of day care. Talking to people with

19

dementia attending day care was crucial to understanding their experiences. However, people

with dementia were more comfortable talking about concrete aspects of day care such as

activities and meals, rather than more subjective topics relating to the impact of the service.

While this should not hinder researchers conducting interviews with people with dementia,

complementing interviews with observational research may enhance our understanding of

day care outcomes. To gain broader knowledge and understanding of the content and

structure of the service, adding interviews with staff would have been useful.

Implications for policy and practice

Based on findings in the current study, the positive impact of day care designed for people

with dementia seem to be clear. Day care should be recognized as an important service for

home-dwelling people with dementia and, while individual preferences must be respected,

people could be encouraged to attend based on the finding of initial reluctance turning

relatively quickly to enjoyment. Highlighting the potential benefits may be particularly

helpful for those who live alone and persistently refuse to attend, given research has indicated

that many in this group may be living with undiagnosed depression and hold misconceptions

about day care services (Durand et al., 2009).

The need for skilled and competent staff in day care is important to meet the needs of people

with dementia and their caregivers. The possibility for face-to-face- communication and

support from staff for caregivers should be emphasized. The described differences in staff

roles could lead to cross-national learning. Models to increase flexibility in the service should

be explored and experiences from such projects should be shared internationally.

Conclusion

Specialist day care seems to provide important support and care for people with dementia and

valued respite and reassurance for caregivers. This paper has added depth to an under-

researched aspect of dementia care to provide knowledge about outcomes and experiences. It

has enhanced understanding of the potential contribution of day care to the support of people

with dementia and their caregivers and highlighted commonalities across two countries

despite significant differences in policy contexts. Day care could be viewed as a key service

for people with dementia and access to it enabled through policy and practice frameworks.

However, more research is needed in a larger sample to further explore the effect of day care

designed for people with dementia both on the attendees and their caregivers.

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Funding

The work was supported by the Norwegian Research Council (222083/H10) and Alzheimer

Scotland.

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